Live liver donors’ information needs: A qualitative study of practical implications for informed consent

Elisa J. Gordon*, Jack Mullee, Anton Skaro, Talia Baker

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

3 Scopus citations

Abstract

Background As live donor liver transplantation is increasingly used to expand the donor pool, concerns remain regarding how best to obtain live liver donors' informed consent. This study assessed donors’ information preferences and their perceptions of informed consent. Methods Cognitive interviews were conducted with donors by telephone about how knowledge items in a new survey instrument were material to informed consent, between November 2011 and April 2012. Thematic analysis was used to analyze qualitative data until reaching saturation. Results Twenty-nine liver donors participated (85% participation). Donors commonly reported being unable to understand or retain much information disclosed during education. Donors preferred information about major donation risks, eg, death and minor risks that would likely affect their daily lives, eg, wound infection. Donors expressed less interest in information about their rights, confidentiality, or the medical procedure itself. Donors’ preferences varied regarding statistical information. Many perceived the disclosure of risk information to be excessive, and rationalized risks they believed to be uncommon or not serious. Donors were disappointed by the brevity of the postdonation hospital stay. Conclusion Our findings suggest that the complexity and volume of disclosed information during evaluation were difficult for donors to adequately comprehend. Donors’ lack of appreciation for the seriousness of complications may undermine their ability to provide informed consent. Future research should develop effective methods of information delivery to enhance informed consent.

Original languageEnglish (US)
Pages (from-to)671-682
Number of pages12
JournalSurgery (United States)
Volume160
Issue number3
DOIs
StatePublished - Sep 1 2016

ASJC Scopus subject areas

  • Surgery

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